contents
29.1 introduction. . . . 443 29.2 Survivors of young adult cancer. . . . 443 29.3 young adult Survivors of childhood cancer. . 444 . 29 3 1. .Transition.of.Care:.Background.and.
Principles. . . . 444 . 29 3 2.. .Transition.of.Care:.Key.Issues.for.Childhood.
Cancer.Survivors.. . . . 445 . 29 3 3. .Transitional.Care.Concerns.Among.Nurses.
in.the.Children’s.Oncology.Group .. . . . 446 . 29 3 4.. .Models.of.Transitional.Care.As.Reported..
By.Nurses.in.the.COG.. . . . 447 . 29 3 4 1. .Model.1:.Adult.Practitioner.
Model. . . . 448 . 29 3 4 2. Model.2:.Resource.Model. . . 448 . 29 3 4 3. Model.3:.Switch.Model . . . . 448 . 29 3 4 4. Model.4:.Comfort.Model . . . 449 29.4 conclusions.. . . . 449 references . . . .449
29.1 introduction
Obtaining access to appropriate medical care by young adults and adolescents is important for both newly diagnosed patients needing treatment and survivors who have completed therapy. Survivors who were treated as young adults require continued follow-up with their medical oncology teams to monitor for recurrence and for treatment-related sequelae. Young adult survivors who were treated for cancer as children similarly require long-term monitoring, but in addi- tion face other major challenges associated with “com- ing of age,” including finding access to competent, age- appropriate follow-up, obtaining medical insurance, completing school and/or finding employment, and completing psychosocial maturation. While all of these are essential for the realization of independent adult- hood, the emphasis of this chapter is the provision of medical care in a framework that is optimal for the emerging adult survivor of childhood cancer.
29.2 Survivors of young adult cancer
In contrast to the situation in pediatric oncology, for- mal programs appear to be uncommon and no uniform guidelines appear to exist for the long-term follow-up (LTFU) of survivors of cancer with onset in young adulthood [1]. In the United States, one factor contrib- uting to this may be the markedly lower rate of enroll- ment of patients onto open clinical trials sponsored by the National Cancer Institute (<2% for those aged 20 to 29 years; see Chaps. 1 and 33) [2]. Patients not treated in the context of clinical trials lack the protocol-driven
access to care after therapy
Karen.E .Kinahan.•.David.R .Freyer.•..
Beverly.Ryan.•.Mary.Baron.Nelson
uniformity of required observations at specified time points in follow-up, and instead are reevaluated accord- ing to the prevailing opinions of treating oncologists, which may vary substantially. In clinical practice, some medical oncologists instruct young adult survivors that they have treated to return for extended follow-up both for disease recurrence and for long-term side effects.
Other oncologists follow patients for a year or two post- therapy and then expect the patients to continue with their primary care physicians. In either setting, other factors may further impede compliance with follow-up by this patient population, although these have not been well studied. These include the generally lower level of concern for serious treatment-related morbid- ity (as patients were developmentally mature when treated), their geographical mobility, and insurance and employment issues in patients who are not yet vocationally stable. While important research has been done to study health-related quality of life in survivors of many young-adult malignancies, there is a need for studies of approaches to follow-up care in these patients.
29.3 young adult Survivors of childhood cancer
Like their counterparts treated for cancer as young adults, young adult survivors of childhood cancer also need to be monitored for disease recurrence, although this is less frequent in the latter group because of the longer time interval from diagnosis. In addition, child- hood cancer survivors are at particular risk for late- onset complications of treatment. Studies indicate that over half of young adult survivors have at least one late effect, and about one-third have severe or moderately severe late complications [3–7]. However, a recent ret- rospective cohort analysis from the Childhood Cancer Survivor Study found that only 45% of survivors aged 20 to 24 years and 39% of those aged 25 to 29 years had a cancer-related medical visit in the 2 years prior to being queried [8]. Therefore, a critical task is to iden- tify optimal approaches to ensure longitudinal care for these survivors, who began their encounter with can- cer as children under the protection of their parents and pediatric providers, but must continue their fol-
low-up as responsible adults. This course of events, characteristic of chronic illness in children generally, has been termed “transition of care.” Because of their risk for late complications of treatment, expert opinion based on limited data recommends lifelong monitor- ing of childhood cancer survivors [9]. As discussed below, planned transitional care is considered to be appropriate for survivors of childhood cancer. The need for more systematic and effective approaches to their care has become acute because of the sheer num- ber of young adult survivors, who currently account for almost 1 in 500 Americans aged 20 to 29 years [1].
29.3.1 transition of care:
Background and Principles
To date, most of the literature dealing with transition of care has focused on adolescents and young adults with special healthcare needs [10–16]. According to the United States Maternal-Child Health Bureau, the
“special needs” population has been defined as, “those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions, and who also require health and related services of a type or amount beyond that required by children gen- erally” [10, 17]. The number of noninstitutionalized children with a chronic condition in the United States alone is estimated to be 4.4 million, or 6.5% of those less than 18 years old [18]. When considering all ado- lescents with a condition requiring follow-up or sur- veillance, that figure may be as high as 30%. This pop- ulation includes those with developmental delay, congenital cardiac anomalies, asthma, cystic fibrosis, diabetes, sickle cell disease, spina bifida, and many with other acquired or congenital disabilities requiring ongoing medical attention. It is estimated that the overall survival of children with special healthcare needs exceeds 80% with current medical care [16].
Because of their similarly high survival rates, risk for developing late effects of treatment and consequent need for lifelong monitoring, childhood cancer survi- vors are felt to be encompassed by the definition of
“special needs” patients cited above. Therefore, many considerations about transition of care for traditional
“special needs” population are applicable to this group
of patients.
The fundamental challenge is to assist this popula- tion in making a successful transition from a child-ori- ented to an adult-oriented healthcare system. Whereas the general orientation in the former is typically nur- turing and directed, the world of adult healthcare requires skills of independence and self-advocacy [14].
Individuals with chronic conditions may need medical care or surveillance, psychosocial support, help with vocational issues if cognitive skills are impaired, con- sultation regarding fertility if it is impaired by an ongo- ing condition or previous therapy, and advice regard- ing insurance coverage. In the United States, it is estimated that one in five young adults (19- to 29-year- olds) with a disability lacks health insurance [19].
From the mid 1980s, medical providers, policy makers, and survivors in the United States have advo- cated for a standard insuring the seamless, coordinated and comprehensive transition of healthcare for chil- dren with special healthcare needs [20]. As a result, pediatric studies have been conducted to identify bar- riers to successful transition. Although each diagnos- tic group of young adults may have certain disease- specific issues, themes common to all individuals with special healthcare concerns have emerged.
First, transition is a process rather than a discrete event. Ideally, it should begin in early adolescence with conversation directed to the young person in order to educate the young adolescent about his/her condition and to teach advocacy skills [21]. The transition pro- cess spans several years and, if the responsibility for medical care is eventually assumed by an adult-ori- ented provider who is different from the originating pediatric service, eventuates in a transfer of care. There is agreement that successful transitions of care are not
“surprise events,” but are the result of careful prepara- tion of the youth, parents, and all involved care provid- ers [22]. A positive attitude is important, which views transition as an expected part of normal development and as something to be celebrated rather than dreaded.
Prior to formal transfer of care, complex patients may require a nurse case manager to coordinate the switch and a patient advocate to ensure that needed services will actually be available in the new care setting [18].
Second, flexibility is appropriate in choosing the age for transition and transfer of care. Transition is com- monly carried out between approximately 18 and
21 years of age, but the exact time needs to be indi- vidualized on the basis of physical development and emotional/social maturity. Two key areas of concern for older adolescents that should be addressed at that time are key symptoms that should prompt them to seek medical evaluation and concerns about sexuality and reproductive health [23].
Third, travel distance to a specialized follow-up center has been identified as an important consider- ation. In a survey of 334 adults with cystic fibrosis, it was found that 71% of patients receiving care at a cys- tic fibrosis center lived within 50 miles of that center, while 75.5% of those receiving care somewhere other than a cystic fibrosis center reported the nearest center was over 50 miles away. Distance may be a consider- ation for individuals choosing a specialty-oriented center [13].
Finally, several barriers that impede successful tran- sition have been identified through focus group/sur- vey methodology. Barriers on the part of providers may include time restrictions, lack of knowledge or training, financial reimbursement and letting go of the established relationship with the child [10, 14, 23–26].
Obstacles to transition for the patient may include dependent behavior, immaturity, lack of support sys- tems, lack of trust in the caregiver, and noncompli- ance. For the family, the need for control, emotional dependency, overprotectiveness, and lack of trust in the prospective adult care providers may also present barriers to transition [25].
The literature regarding transition for children with special healthcare needs has generally identified four models of care: (1) disease/specialty-specific, (2) ado- lescent health-focused, (3) a primary care model where the family practitioner or internist is the coordinator, and (4) a single-site model where the ancillary services remain constant. The two predominant models in use appear to be the disease/specialty-specific and adoles- cent health-centered types [23, 25, 27].
29.3.2 transition of care: Key issues for childhood cancer Survivors
Because of the multiple physical and psychosocial risk
factors imposed by their therapy and previous disease,
childhood cancer survivors require lifelong care [9, 14,
21, 28]. They are at increased risk for secondary neo- plasms, organ dysfunction, endocrine abnormalities, neurocognitive deficits, and early death [29–34]. Thus, every long-term survivor of childhood cancer will ulti- mately need to be transitioned from his or her pediat- ric environment to an adult care setting. How this can take place and various solutions are presented in the next section. A factor complicating this transition is an apparent lack of knowledge and understanding on the part of the survivor and the primary care physicians regarding the increased risk for these various health and psychosocial impairments [35, 36].
In the cancer survivor literature, the most fre- quently described approach for LTFU is a clinic designed for this purpose at a pediatric cancer center [1, 37]. However, it is likely that multiple models of care are needed to address the heterogeneity in char- acteristics, location, and resources of this survivor population. There is an ongoing debate within LTFU programs about how to best provide care for child- hood cancer survivors who have reached adulthood.
Traditionally, many pediatric oncologists and pediat- ric oncology nurses have continued to see these patients as needed to provide education and screening for late effects. This practice has continued despite concerns that some adult healthcare needs may not be ideally dealt with by pediatric providers (e.g., screen- ing and treatment for hypertension, infertility, dyslip- idemias, and type II diabetes). In addition, because there is a need to record and research late-occurring long-term effects, there is reluctance and often an inability to release patients from follow-up at the pedi- atric oncology center. In 1998, Oeffinger et al. pub- lished data from the Children’s Cancer Group and the Pediatric Oncology Group indicating that few pro- grams focus on the long-term healthcare needs of adult survivors of childhood cancer. At that time, most treating institutions were beginning to focus on the continued care of their pediatric cancer survivors.
A reported 53% of the institutions interviewed had a LTFU program at their institution. In more than 90%
of the programs, adult survivors were followed up in a pediatric institution by a pediatric hematologist- oncologist [38]. Only 13% of responding institutions utilized an adult-oriented provider, and <10% involved a primary-care physician.
29.3.3 transitional care concerns among nurses in the children’s Oncology group
To determine their views on what is the most effec- tive method for providing LTFU services to young adult survivors of childhood malignancies, a project was undertaken by the Late Effects Nursing Subcom- mittee of the Children’s Oncology Group (COG). An additional goal of the study was to determine existing barriers to care and concerns the pediatric oncology team members had in caring for adult survivors in their pediatric settings. Practitioners were also asked what they conceived is the “ideal” follow-up program for adult survivors of pediatric cancer. We were inter- ested in identifying existing successful models of care already in place for young adult childhood cancer survivors that may be adapted for use in other insti- tutions.
To accomplish this, a short, open-ended question- naire was developed. The pilot survey was performed at the March 2003 COG meeting. Questionnaires were distributed to nursing members who attended the Late Effects section of the Clinical Practice Com- mittee. The survey was received positively with affir- mation that care of young adult survivors was an issue of concern to many LTFU programs. A revised questionnaire was sent out later to nurses at other institutions via the COG Late Effects e-mail network.
The sample of responding institutions was limited
(23 out of a total of >240 COG institutions), but did
represent a variety of both large and small medical
centers in the United States and Canada. Seventy per-
cent had a relationship with an institution that pro-
vided adult care and 30% did not. In addition, 87% of
the respondents felt that their LTFU clinic would
benefit from affiliating with or developing a LTFU
program for adult survivors. The most frustrating
issues faced by pediatric providers in caring for adult
survivors of childhood cancer were identified. Nurses
felt that there were needs specific to the adult popula-
tion not being met (e.g., obtaining higher education
and employment, chronic rehabilitation, assisted-liv-
ing situations for those with more severe cognitive
deficits, addressing the emotional issues of transition,
providing written information in Spanish, and pro-
viding a separate location away from the pediatric institution where follow-up clinics could be held). A major barrier for adult survivors in the United States is inadequate or absent health insurance. Respon- dents from COG institutions dealt with this issue in a variety of ways, including 39% who provided free vis- its or used available funding from their institution;
another 26% were unable to see any patients without insurance. Another difficult issue is tracking patients who have become “lost to follow-up.” None of the nurses surveyed had a formalized way of finding these patients. Two nurses tried to track patients themselves, making phone calls when they had the time. Nine programs had databases to track patients, but most did not have the personnel to do an ade- quate job. Three programs relied on Certified Research Assistants to track patients who were treated in studies. Two programs had a cancer registrar involved with the program who tracked patients, and three utilized yearly reminders and newsletters.
Interesting information was revealed when the responding nurses were asked to describe their opin- ion of an “ideal system” for follow-up of adult survi- vors. All of the answers were different, reflecting a wide variety of beliefs. Some opinions included:
Developing a close relationship with an adult facil- ity for transition, and sharing a database.
Transferring care to an adult primary care provider with access to specialists and psychosocial support.
Developing an adult practitioner model with a di- rect link to the pediatric oncologist for consulta- tion.
Providing a setting that combines adult and pediat- ric care, with family practitioners, pediatric oncolo- gists or other subspecialists, and pediatric nursing practitioners.
Transitioning within the same institution to the adult setting.
Yearly contact by phone, mail or e-mail to maintain a database.
At the heart of the transition issue is a feeling of con- flict among pediatric providers. There is a clear desire to maintain a relationship with adult survivors in order to collect data about the effects of childhood cancer and its treatment that may occur much later in life. In addition, there is a desire to keep the survivors
informed of any new developments in the manage- ment of late effects. There is also a well-founded con- cern that survivors may not receive the most compre- hensive follow-up care from an adult provider who may be unaware of long-term risks of childhood can- cer treatments. At the same time, there is the realiza- tion that providing care to adults is outside the scope of practice of pediatric providers, as well as the logis- tics of continuing to provide care to an ever-growing number of survivors in addition to newly diagnosed patients.
In reality, not all pediatric oncology treatment insti- tutions will choose or are able to have a formal LTFU program for their adult survivors. However, pediatric oncologists, advanced practice nurses, and other team members must remain cognizant of the often-compli- cated healthcare issues adult survivors may face. They also need to advocate for their patients by acting as a bridge to adult primary care physicians and set up referrals to subspecialists who are familiar with child- hood cancer late effects. Advocacy can also come in the form of providing information. The COG recently created formal Long-term Follow-up Guidelines and Health Links for guidance in providing care to survi- vors. These risk-based, exposure-related clinical prac- tice guidelines provide recommendations for screen- ing and management of late effects that may potentially arise from childhood cancer treatment (these can be accessed at www.survivorshipguidelines.org) [39, 40].
This information is valuable for pediatric oncologists and pediatricians, and is especially useful for adult practitioners who are not familiar with potential or actual late effects of childhood cancer.
29.3.4 Models of transitional care as reported By nurses in the cOg
In the COG nursing survey described above, respon- dents also provided descriptions of their programs.
Based upon those descriptions, the authors grouped
programs with similar features and were able to dis-
cern four basic models used for care delivery to young
adult survivors. Some pediatric treating institutions
appeared to use a combination of one or more of the
model types. Respondents to the questionnaire repre-
sented free-standing pediatric treating institutions,
major medical centers, and two Canadian hospitals.
This is important because different forms of access to adult care providers may influence the quality of the transition of care. It should be noted that the four basic models that were discerned in this study, and are described below, are not exhaustive of valid approaches to transition of care. Some models that are currently less common, such as that where responsibility for sur- vivor follow-up is formally transferred to community- based adult primary care providers, were not repre- sented in the study sample.
29.3.4.1 Model 1: adult Practitioner Model The adult practitioner model was identified when a pediatric oncology advanced practice nurse, experi- enced in LTFU issues works with an adult practitioner (i.e., an internist or family practice doctor) providing follow up of the pediatric cancer survivor while screening for the patient’s potential or actual late effects of therapy. Patient education, health promo- tion, and health maintenance are important parts of this model of care. This takes place in an adult care facility and patients are referred to a special group of subspecialists who are familiar with the common late effects of the cancer treatment. A social worker or psy- chologist may be part of the team. The advantages of this model are the ability to capture data and potential for research, easy access to subspecialists, and insur- ance coverage, particularly if the doctor in-plan is the primary care provider. In addition, the physician is trained in general medicine and can see the survivors for non-cancer-related issues. Disadvantages are that the childhood cancer survivor must go to a new facil- ity for care and medical records may be difficult to obtain.
29.3.4.2 Model 2: resource Model
The resource model was identified when a young adult or adult survivor is referred to a pediatric treating institution on a one-time or annual basis, but also sees a primary care provider. There is a great deal of com- munication from the pediatric oncologist to the gen- eral medicine physicians. Physicians in the adult set- ting are directed in their care for the survivors in issues
related to late effects. Advantages to the patient include maintaining contact with a pediatric cancer center and having their primary care provider being educated by the pediatric oncologist, an arrangement that can help with insurance coverage. Some disadvantages could be the loss of data on out-going survivors and the amount of paperwork for the pediatric oncologist. In addition, if each primary care practitioner has only one or two survivors in their practice, their expertise with this population could be an issue.
29.3.4.3 Model 3: Switch Model
The switch model was identified when pediatric oncol- ogy patients are seen in a major medical center with a pediatric oncology department. Once the young adult survivor is “too old” to be seen in the pediatric setting they will be “switched” to an adult provider within the same medical center. Advantages to the patient are that they are familiar with the setting and location of the hospital or clinic. Data and medical records can also be readily shared. The general consensus among pediatric oncologists is that it is not ideal for adult oncologists to be made responsible for follow-up of these patients due to the demands of treating large numbers of newly diagnosed adults. In this model, it may be better for patients to be referred to general practitioners, internal medicine, or family practice physicians. A collabora- tive relationship needs to be formed between the pedi- atric oncology department and the group accepting the survivors for follow-up. Will the pediatric oncolo- gists remain “in the loop” and be utilized for questions?
If the answer is no, then the transition process may be less than ideal for the patients.
29.3.4.4 Mode 4: comfort Model
This model is when the pediatric oncology team keeps
the patients coming back for follow-up indefinitely,
irrespective of their age or time elapsed since diagno-
sis. Some of these oncology programs do not have
defined LTFU programs and may see their survivors in
the general oncology clinic. One advantage of this
model is that the young adult and adult survivor is
familiar with the pediatric oncologist and staff mem-
bers. In addition, longitudinal research can be per-
formed on these patients. Disadvantages are the pedi- atric oncology team’s lack of expertise with adult care issues as they arise and lack of “well adult” care pro- vided. Referral to competent, knowledgeable, adult subspecialists can also be difficult to make from a pediatric setting. Finally, treating young adults along- side young children may be uncomfortable for both sets of patients.
29.4 conclusions
Access to appropriate care for young adults following completion of cancer treatment is necessary both for those who were treated as young adults and for those treated as children. Both groups have increased risks for serious treatment-related complications, although the risks appear to be greatest in those treated during child- hood before growth and development were complete.
Both groups also face similar challenges characteristic of young adulthood that may interfere with obtaining appropriate medical monitoring, including geographi- cal mobility, incomplete education or vocational train- ing, lack of an established career, uncertain health insur- ance status, and varying degrees of social maturity.
In addition to all of these, a key challenge for young adult survivors of childhood cancer is making a suc- cessful transition of care from the pediatric to adult- oriented healthcare system. The ideal of carrying out such a planned, coordinated transition of care for chil- dren with chronic illnesses – including cancer survi- vors – is now well-accepted. Despite important barri- ers that can impede transition, several successful models of care are in use that facilitate transition of the lifelong follow-up from the exclusive domain of pedi- atric oncology to the more suitable realm involving adult medicine. The ever-growing number of child- hood cancer survivors requires a concerted effort to develop effective mechanisms for caring for young adult survivors, which will ensure risk-based health monitoring, timely intervention in the event of prob- lems, psychosocial support, wellness education and disease prevention practices, vocational and insurance assistance, and collection of outcomes data, which are vital for the completion of important studies of late effects and transitional care.
references
1. Hewitt M, Weiner SL, Simone JV (2003) Childhood Cancer Survivorship. The National Academies Press, Washington DC, pp 90–127
2. Albritton K, Bleyer WA (2003) The management of can- cer in the older adolescent. Eur J Cancer 39:2584–2599 3. Garre ML, Gandus S, Cesana B, et al (1994) Health sta-
tus of long-term survivors after cancer in childhood:
results on a uni-institutional study in Italy. Am J Pediatr Hematol Oncol 16:143–152
4. Vonderweid N, Beck D, Caflisch U, et al (1996) Stan- dardized assessment of late effects in long-term survi- vors of childhood cancer in Switzerland: results of a Swiss Pediatric Oncology Group (SPOG) pilot study.
Int J Pediatr Hematol Oncol 3:483–490
5. Stevens MC, Mahler H, Parkes S (1998) The health sta- tus of adult survivors of cancer in childhood. Eur J Can- cer 34:694–698
6. Sklar CA (1999) Overview of the effects of cancer ther- apies: the nature, scale and breadth of the problem Acta Paediatr 88:1–4
7. Oeffinger KC, Eshelman DA, Tomlinson GE, et al (2000) Grading of late effects in young adult survivors of childhood cancer followed in an ambulatory adult setting. Cancer 88:1687–1695
8. Oeffinger KC, Mertens AC, Hudson MM, et al. (2004) Health care of young adult survivors of childhood can- cer: a report from the Childhood Cancer Survivor Study. Ann Fam Med 2:61–70
9. Lampkin BC (1993) Introduction and executive sum- mary. Cancer 71:3199–3201
10. Scal P, Evans T, Blozis S, et al (1999) Trends in transi- tion from pediatric to adult health care services for young adults with chronic conditions. J Adolesc Health 24:259–264
11. Boyle MP, Farukki Z, Nosky ML (2001) Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views. Pediatr Pulmonol 32:428–436 12. Flume PA, Anderson DL, Hardy KK, Gray S (2001)
Transition programs in cystic fibrosis centers: percep- tions of pediatric and adult directors. Pediatr Pulmonol 31:443–450
13. Anderson DL, Flume PA, Hardy KK, Gray S (2002) Transition programs in cystic fibrosis centers: percep- tions of patients. Pediatr Pulmonol 33:327–331 14. Fleming E, Carter B, Gillibrand W (2002) The transi-
tion of adolescents with diabetes from the children’s health care service into the adult health care service: a review the literature J Clin Nurs 11:560–567
15. Madge S, Bryon M (2002) A model for transition from pediatric to adult care in cystic fibrosis. J Pediatr Nurs 17:283–288
16. Geenen SJ, Powers LE, Sells W (2003) Understanding the role of health care providers during the transition of adolescents with disabilities and special health care needs. J Adolesc Health 32:225–233
17. McPherson M, Arango P, Fox H, et al (1998) A new definition of children with special health care needs.
Pediatrics 102:137–140
18. Wojciechowski EA, Hurtig A, Dorn L (2002) A natural history study of adolescents and young adults with sickle cell disease as they transfer to adult care: a need for case management services. J Pediatr Nurs 17:18–27 19. White PH (2002) Access to health care: health insur- ance considerations for young adults with special needs/disabilities. Pediatrics 110:1328–1335
20. Blum RW (2002) Improving transition for adolescents with special health care needs from pediatric to adult- centered health care. Pediatrics 110:1301–1303 21. Rosen DS (1993) Transition to adult health care for
adolescents and young adults with cancer. Cancer Suppl 71:3411–3414
22. Reiss J, Gibson R (2002) Health care transition: destina- tions unknown. Pediatrics 110:1307–1314
23. Scal P (2002) Transition for youth with chronic condi- tions: primary care physicians’ approaches. Pediatrics 110:1315–1321
24. Hobbie WL, Ogle S (2001) Transitional care for young adult survivors of childhood cancer. Semin Oncol Nurs 17:268–273
25. Hergenroeder AC (2002) The transition into adulthood for children and youth with special health care needs.
Tex Med 98:51–58
26. Zebrack BJ, Eshelman DA, Hudson MM, et al (2004) Health care for childhood cancer survivors Cancer 100:843–850
27. White P (1999) Transition to adulthood. Curr Opin Rheumatol 11:408–411
28. D’Angio G (1975) Pediatric cancer in perspective: cure is not enough Cancer 35:867–870
29. Nicholson HS, Fears TR, Byrne J (1994) Death during adulthood in survivors of childhood and adolescent cancer. Cancer 73:3094–3102
30. Bhatia S, Robison LL, Oberlin O, et al (1996) Breast cancer and other second neoplasms after childhood Hodgkin disease. New Engl J Med 334:745–751 31. Hudson MM, Jones D, Boyett J, et al (1997) Late mor-
tality of long-term survivors of childhood and adoles- cent cancer. J Clin Oncol 15:2205–2213
32. Oeffinger KC, Eshelman DA, Tomlinson GE, et al (2000) Providing primary care for long-term survivors of childhood acute lymphoblastic leukemia. J Fam Pract 49:1133–1146
33. Mertens AC, Yasui Y, Neglia JP, et al (2001) Late mor- tality experience in five-year survivors of childhood and adolescent cancer. J Clin Oncol 19:3163–3172 34. Neglia JP, Friedman DL, Yasui Y, et al (2001) Second
malignant neoplasms in five-year survivors of child- hood cancer: Childhood Cancer Survivor Study. J Natl Cancer Inst 93:618–629
35. Kadan-Lottick NS, Robison LL, Gurney IG, et al (2002) Childhood cancer survivors’ knowledge about their past diagnosis and treatment. JAMA 287:1832–1839 36. Vaughn DJ, Meadows AT (2002) Cancer survivor
research: the best is yet to come. J Clin Oncol 20:888–
37. MacLean WE, Foley GV, Ruccione K, Sklar C (1996) 890 Transitions in the care of adolescent and young adult survivors of childhood cancer. Cancer 78:1340–1344 38 Oeffinger KC, Eshelman DA, Tomlinson GE, Buchanan
GR (1998) Programs for adult survivors of childhood cancer. J Clin Oncol 16:2864–2868
39. Children’s Oncology Group (2004) Long-term follow- up guidelines for survivors of childhood, adolescent and young adult cancers. www.survivorshipguidelines.
org (as of August 12, 2004)
40. Eshelman DA, Landier W, Sweeney T, et al (2004) Facil- itating care for childhood cancer survivors: Integrating Children’s Oncology Group long-term follow-up guide- lines and health links in clinical practice J Pediatr Oncol Nurs 21:271–280
